Carol’s story

Published: September 17 2022
Last updated: September 28 2022

Carol talks about losing her daughter Bella to SUDEP

I lost my beautiful daughter Isabella aged just 16 in June 2018 to SUDEP (Sudden Unexpected Death in Epilepsy).

It all started when Bella was around 7 years old. She kept falling over, then she would have these strange jumps. These increased to night seizures, which then increased to tonic-clonic seizures. After countless trips to the hospital, and drug after drug (that just did not work), our only hope was surgery. So, then we started all the necessary tests.

All the time, she was getting worse and was practically housebound for the last year of her life. She denied having anything wrong with her, she would never say the word ‘epilepsy’. She hated it all, the drugs, and the sheer hopelessness of it all. She just wanted to be like every other teenage girl, into makeup, Snapchat and all the other stuff girls her age were doing. Instead, she was black and blue from all the seizures.

The 15th June 2018 was a hot sunny day and Bella was at home. My son, Joe, rang me to say he could not get in the house. I then left work to go home to let Joe in. I went upstairs shouting for Bella, to say ‘why wouldn’t you let Joe in?’ Then I found the bathroom door locked. My heart just sank – I knew. I had to break down the door, and there, submerged in the bath, was my beautiful 16-year-old daughter Bella – gone from my life forever. An inquest confirmed the cause of death was SUDEP (Sudden Unexpected Death in Epilepsy).

I run regularly to help with my grief,” says Carol. “I find it helps me keep sane. I miss my girl so much, the pain can be pretty unbearable at times, so I like to keep busy.

When I came across the Epilepsy Action challenge to run 50 miles through February, I thought that would be great for me to take on. I set up the donation page on Facebook and within a few hours the £150 target was smashed – the donations were coming in thick and fast (currently raised £1300)! I decided to up the ante to run 100 miles through February instead. Epilepsy has overshadowed a good few years of my life and I strongly feel more needs to be done. My hope is one day there will be a cure for this heart-breaking condition.”

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